This is my first post, so thank you for reading it! It’s 5 months since I had Bob (the blob) diagnosed and stented, and 5 weeks since I had a flow diverter and coils inserted. Bob was an unruptured giant, at 30mm, and was discovered after I started getting double vision and mild headaches. Since coiling I have ferocious, relentless headaches, which I hadn’t expected. It’s all very frightening and I’m becoming an emotional wreck.
The headaches vary. Sometimes it feels as though something is chewing the inside of my head; sometimes it’s as though that part of my brain is being wrung out like a cloth; other times I feel as though I’ve been kicked in the head; there are times I feel as though my head is in a vice; meanwhile, there is a permanent ache that simply doesn’t lift at all. The latest pain is behind my eye, which feels as though a sticking plaster is being repeatedly pulled off it. On top of this I feel fatigued, nauseous and lacking in energy (a bit like having an ongoing hangover) and I feel as though my health and well-being is declining rather than improving. Until my diagnosis I was very active, fit and healthy, but now I’m piling on the pounds and feeling very unwell.
I apologise for making this sound like one long complaint. I don’t mean it to be! I wasn’t expecting these symptoms and I really want to be able to manage my expectations. So if any of you lovely people can advise me about what I should be expecting as I recover I would be so grateful.
i did have unpleasant sensations after the coiling/stent procedure was done, but not as severe as what you are having. Six months later, I still tire easily. My annie was large at 20 mm and it was pressing on the optic nerve of my right eye. My doctor did say that it was normal to have pain /discomfort for up to six months after the procedure. Are you being followed up with MRI/MRA testing. I had an MRA in March and will be having another one this month. Perhaps you should consult your doctor about the symptoms you are experiencing, Hope you are feeling better soon, Ida
Thank you Ida, I will be having a follow up MRI in 5 months time, but nothing in the meantime. My GP has written to my consultant to ask that I have an earlier scan to check that all is as it should be. I’m glad to hear you’re on the mend
Chrissie, I believe everything you’re feeling right now is what most of us go through after brain surgery. I think it is in part because our brain is trying to get used to the new blood flow. I’m not a doctor, it’s just a guess.
It’s really important to stay hydrated and it’s just as important to get the proper amount of protein for your brain to heal. Talk to a dietician or nutritionist that has experience in the Neuro sector. Perhaps you can just call one up, or talk to the surgeon and have them get you a follow up. Watch the carb intake as they will make you feel sluggish. I love carbs but have to be careful. Cheezits have 5gm of protein in one of their small snack size bags if those are available.
You may also need to drink a sports drink or several a day. I’m not sure the brands where you live, Gatorade is a big one in the States. I like the G2 types. It replaces electrolytes the dietician or your surgeon, perhaps even your GP can explain and provide a suggestion of how much. I usually need to drink three of the quart size for several months after coiling and for about six weeks after just an angiogram. Plus the water and increase protein.
A cold cloth or ice pack at the back of your neck may help, ask the surgeon. I used to use the ice pack I got for my foot surgery, (even went to the hospital and got a second one) for my neck and a couple of cheap eye masks that I keep in the refrigerator Don’t laugh too loud, sometimes I’d put an ice pack on top of my head. Several times I had my whole head covered in ice packs with a big bandana holding them in place. Now laugh out loud!
Another thing I did and still do, is after a cup of tea, I would take the tea bag and put it over the eye that hurt the most. If someone else is drinking a cup of tea, I get one for each eye at the same time! It feels really good.
Hang in there, we are here to help!
Thank you so much for your suggestions, Moltroub. I have a lovely vision of you with ice packs and tea bags all over your head! It’s all great advice and I wil definitely look up a nutritionist. I have been using eye masks and will try ice packs on my head and the energy drinks. Great ideas. Thanks for verifying that these symptoms are quite normal. The doctors do an awesome job but once they have done their bit it’s quite a long and lonely recovery, which I hadn’t expected - I thought I’d be back to work within a couple of weeks! Thanks for sharing your experience.